Walkers Take Strides To Fight Ms More Than 1,200 People Hike Through Lehigh Parkway To Raise Money For Research About Disease.

May 08, 2000|by MARIELLA SAVIDGE, The Morning Call

Tears came easily as Ed Lilienthal talked about multiple sclerosis, the illness that changed his life.

Several times Sunday morning, they welled up then cascaded down his cheeks. The waves rose and fell, especially when he spoke about a little girl at last year's Multiple Sclerosis Walk.

Escorted by her mom and a baby brother in a stroller, the girl approached the registration tent.

The mother explained that the girl had canvassed the neighborhood by herself so she could walk.

She plopped a bag filled with coins on the table as her donation.

"That got to me," Lilienthal said, wiping his cheek.

Both Lilienthal and his wife, Torrey, have MS. They met at an MS support group in 1993, shortly after each was diagnosed. The Catasauqua couple is part of the reason more than 1,200 people walked six miles through Lehigh Parkway in Allentown, pledging $103,000 for the National Multiple Sclerosis Society's search for a cure.

Walks were also held in Bethlehem and Reading.

The Lilienthals donated their time to help the people who help them.

A self-described jock, Lilienthal, 42, said he used to enjoy the day-to-day rat race.

Now, though he looks healthy at first glance, he walks with a cane to keep his balance as he tries to skirt the relentless pain in his feet.

"It's like a vice grip tightening around the joints in my toes," he said.

The uncertainty is even more devastating than the pain.

"I could wake up one day and not be able to get out of bed. Or I could get out of bed and find that my legs won't support me anymore," he said.

Torrey Lilienthal, 32, describes their disease in terms their children can grasp. She is the mother of Josh, 10, and Brett, 9. Ed has a daughter, Jessica, 12.

"I told Jess it's like little Pacmen eating away at the inside of our legs," she said, referring to the popular computer game.

Multiple sclerosis is an inflammatory condition that destroys myelin, a fatty material that insulates nerves and allows them to transmit their impulses.

The speed and efficiency with which these impulses are conducted permits smooth, rapid and coordinated movements to be performed with little conscious effort. In multiple sclerosis, the loss of myelin disrupts the nerves' ability to conduct electrical impulses to and from the brain, which produces the disease's varied symptoms.

The sites where myelin is lost appear as hardened or scarred areas. These scars appear at different times and in different areas of the brain and spinal cord -- the term multiple sclerosis literally means `many scars.`

Lilienthal first experienced symptoms when he was 24. His optic neuritis was a common start to the disease, though he didn't know it at the time. It caused him to see an object better through peripheral vision than straight on.

"Then it went away," he said, and he didn't think about it for many years. He didn't know that the comings and goings of MS are common. Sometimes symptoms appear only to disappear after a few weeks -- to return or not.

In his mid-30s, he started getting sick frequently and, at other times, staying home from work because of overwhelming fatigue. He was fired from his job as an office equipment service technician.

About that time, he met Torrey. He had been out of work for a while, and she encouraged him to seek Supplemental Security Income, for which a person has to be certified through government-approved doctors.

"Torrey had to drag me to the doctor. It's hard when a man can't support himself anymore.

"I did my best through the examination, but when the doctor left the room, I lost it," he said.

Torrey Lilienthal's journey has been no picnic, either.

A recovering alcoholic, she's been clean and sober for 12 years.

But when she dissolved into tears upon hearing her diagnosis, the doctor immediately wanted to put her on Valium to calm her.

"It used to be one of my favorite drugs," she said with a giggle.

Another treatment brought an even bigger giggle. Research has shown that another former favorite, marijuana, can ease the pain of MS sufferers.

"But we got through all that with no drugs. Sometimes doctors don't understand the trials of an addict," she said.

Torrey was in college at the time, working toward a bachelor's degree in electronics, but when the whole right side of her body went numb, she dropped out of class.

Unlike her husband, she didn't enjoy the rat race. She feels her MS forced her to take stock and slow down.

The two run a small repair shop, owned by his mother, in Catasauqua. Essentially their own business, Neighborhood Electronics in North Catasauqua allows them to make their own hours in accordance with their health. They make little money from the endeavor; it's more of a way to keep from being idle.

They live below the poverty level, he said, and don't really mind because even though they're both in constant pain, it could be worse.